Heather's Hangout

Sharing the people, places & little moments that make a difference.

One voice on cancer survivors day June 4, 2017

HHkids5_LSshirts52017

Grateful to celebrate life with my nieces and nephew

Today is National Cancer Survivors’ Day. This annual day celebrates people who are cancer survivors, and also family members and friends. Because anyone who has faced the disease is a true survivor.

2

I’m so blessed to be alive 20 years after my diagnosis with osteosarcoma, a form of bone cancer. I’m fortunate to have survived 13 months of aggressive chemotherapy and a surgery to replace my femur and knee with titanium. I’m grateful to wake up to celebrate every day with the more than 15.5 million other cancer survivors in the United States.

2

Today, I’m also honored to be traveling to Washington, DC to join 39 other LIVESTRONG advocates for the One Voice Against Cancer lobby day. There will be 130 volunteers representing 19 organizations from 38 states coming together to advocate for funding for cancer research and other critical cancer programs. If you follow politics or the news even a little bit, you know the important issues being debated about healthcare and coverage for millions of Americans. We’re going to make sure that the voices of 15.5 million cancer survivors and their families are heard by our elected representatives. We’re going to speak on behalf of those who are no longer here with us because of cancer, and millions who will hear the words, “You have cancer” in the future.

2

This year at OVAC, we’ll push to make funding for cancer research and prevention a priority. It’s estimated that more than 1.7 million people in the United States will be diagnosed with cancer this year, and over 600,000 will die. There is a lot of great research and prevention programs being developed and we don’t want to see those slowed or stopped. My fellow cancer advocates and I will be meeting with our senators and representatives to ask them to:

  • Support a $36.2 billion budget for the National Institute of Health in FY18, including funding provided from the 21st Century Cures Act;
  • Support $6 billion for the National Cancer Institute; and
  • Support $514 million for the CDC cancer programs

Someone once told me that I should ‘get over’ having cancer. For a very brief moment, I took it to heart, wondering if I should try to get over it. Until I realized that I can’t get over it. Because I did have cancer. I didn’t choose it and I’m not ashamed or embarrassed for having it. I am a cancer survivor. That is the reality of my life. Being a cancer survivor is as much as a part of me as being a female, daughter, sister, Caucasian, etc. We can’t compartmentalize various pieces of who we are because it’s the sum parts that make us whole. So I don’t apologize for being a cancer survivor. And I’m not going to get over it. I’m going to embrace it and celebrate it every day because it means that I’m alive to enjoy another day.

2
Survivor_LIVESTRONGimage

A beautiful statement!

I feel great gratitude and blessings for being a cancer survivor for 20 years. I am fortunate. And I believe in showing my blessings and gratitude by giving back and helping others. It’s why I volunteer for great organizations that support people with cancer, such as LIVESTRONG, American Cancer Society and Imerman Angels. It’s why I volunteer to mentor survivors still going through treatment or even post-treatment. It’s why I get excited to advocate for others affected by the disease during the One Voice Against Cancer lobby day and other opportunities.

2

I can’t wait to share more about my experience in our nation’s capitol with inspiring people so stay tuned. In the meantime, if your life has been touched by cancer, I hope you celebrate this day (and every day) doing something that makes you incredibly happy!

2

I’m honored and excited to share that an article that I wrote relating to lessons I’ve learned as a cancer survivor was recently published by Coping with Cancer magazine. I’d love to share it with all of you in case you are cancer survivor or know a cancer survivor. It’s my way of fulfilling my love of writing with trying to ease another person’s worry and anxiety.

Advertisements
 

5 of my favorite resources for cancer survivors June 5, 2016

HH_survivorsshirt

Love to wear this shirt!

Today is National Cancer Survivors Day and I’m thrilled to be part of this special celebration of life! There currently are more than 14.5 million survivors in the United States, and more than 32 million cancer survivors worldwide. A new report by the American Cancer Society and the National Cancer Institute estimates the number will grow to more than 20 million by 2026.

2

According to the National Cancer Survivors Day Foundation, the organization that coordinates the celebration, “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.” Many of you know my story as a cancer survivor – I was diagnosed with bone cancer at 21 years old, just three months shy of graduating from college. After 13 months of intense chemotherapy and surgery to replace my femur/knee with titanium, I faced my dad’s diagnosis of multiple myeloma and his eventual death six years later. It’s been an interesting road filled with ups and downs, side effects, smiles and tears. But I’m thankful for every day that I wake up healthy and able to walk on my own two legs.

2

I started thinking of things that helped me through treatment and as a survivor through the years so thought I’d share a few that touch my life in very positive ways:

2

Other cancer survivors: As I mentioned above, there are almost 14.5 million cancer survivors in just the United States. If you are one of these people, odds are that you already know other survivors. Use this connection to provide mutual support, encouragement, laughter, friendship and whatever you need to give and receive. This is probably one of the most important steps you can take. Meeting other cancer survivors can be empowering, comforting and joyful. No one should live on a life boat alone. Almost 18 years out of treatment, I still feel comfort when I encounter another survivor and am often amazed at the almost instant connection I have experienced with some. Sadly, not everyone is still on this Earth that I’ve met through the years, but all of them are carried in my heart. Ask your oncologist to help foster meetings, join an online support group or look for a local in-person support group.

2

LIVESTRONG’s Guidebook: I had the honor to review the first edition of this incredibly informative guide and was impressed and excited about this free resource (shipping is extra). The two-book set (includes a planner and journal) is packed full of helpful tips for navigating life through diagnosis, treatment and post-treatment. It provides lots of questions to ask to your healthcare team and others, financial tips, resources and more. I think it’s a must-have for people during cancer treatment.

2

Support groups: There are many great opportunities to meet other cancer survivors at local support groups – check at your hospital, cancer center, community center, nonprofits and church. These groups may focus on general cancer-related issues, specific cancer types, genders, ages, survivorship issues, fertility, chronic cancers, and more. It’s so wonderful to find others that relate to your challenges, illness, fears, anxiety and more. Nothing feels better than someone hugging you while saying, “I get it.” Truth be told, I didn’t have time during treatment to attend a support group….treatment for bone cancer is very aggressive and mostly in-patient so there were months that I was in the hospital more than I was out (yes, it sucked and my hospital became known as “Hotel Beaumont”). And at 21 years old, I wanted my free time to be as normal as possible (even though I had NO idea what normal was anymore). But shortly after I finished treatment, I started feeling a bit isolated and overwhelmed with emotions. My friends were graduating from college (I graduated between chemo treatments) and starting careers while I needed recovery time and to figure out this new me. Plus, after my dad’s diagnosis and death, I struggled with survivor’s guilt (still do sometimes). So I found a local support group and also attended some young adult survivors conferences. These helped immensely. If you’re uncomfortable with the idea of sharing in a group, that’s okay! Check out Imerman Angels, which provides one-on-one support to people in treatment by matching you with a survivor of your cancer (they try to also match gender and age range). They also have mentors for caregivers. There are many online support groups too.

2

Your medical team: Your oncologist(s), nurses, social worker and other healthcare team should be a wealth of knowledge and resources to help guide you through treatment and life after treatment. My team, for instance, provided a care treatment plan for during chemotherapy, as well as the first 2 years post-treatment, so I could know a bit of what to expect (of course, the many side effects couldn’t be planned but my doctors have been there to help me through. Even though I’m many years out of treatment, they have been the ones initiating tests and conversations with other doctors as I’ve dealt with fertility concerns the past few years.). They also were available via phone any time my parents or I had questions or concerns. I realize that not everyone is as lucky as I am with my oncology team (I’ve heard some sad stories). I honestly don’t know what I would do without my team. They provided much support (and hugs) during treatment and continue to be my go-to team many years post-treatment. Talk to your doctors and their team about any concerns, treatment side effects or anything else. These are the people dedicated to saving your life. They’re on your side.

2

Cancer-related nonprofit organizations: There are some fantastic organizations that provide a variety of support to cancer survivors. I mentioned the LIVESTRONG Guidebook above, but the organization provides a host of other support, including information on fertility, health and wellness, survivorship, financial navigation, and more. The American Cancer Society has been a leader in providing cancer support for decades and local chapters can be found throughout the country. Young adult survivors tend to have unique needs, causing many focused organizations to form. The SAMFund and Ulman Fund are two well-organized nonprofits that I’ve worked with in the past that provide financial, emotional and other support to young adults. There are also organizations that focus on specific cancers, such as breast cancer, melanoma, multiple myeloma, and others.

2

If you’re a cancer survivor – congratulations and know you’re not alone. Now, get out there and celebrate life today and every day! Celebrate YOU today. I’m off to embrace life….today and every day. I hope you do too.

2

If you have other tips and resources to share, please feel free to leave a comment.

 

 
%d bloggers like this: